All About PCOS: A Comprehensive Guide to Getting a Diagnosis and Managing the Disorder Through Diet and Medication

Since puberty, you’ve had to deal with the ebb and flow of your hormones. And when things are in balance, you generally feel good. Problems arise, though, when these hormones are imbalanced. One possible result: polycystic ovary syndrome, or PCOS.

What Is PCOS Exactly?

PCOS is a metabolic and hormonal disorder that affects about 10 percent of women. (1) It occurs when the ovaries or adrenal glands begin to make excess androgens. (2) (These are “male” hormones that women naturally have low amounts of in their bodies.) Women with PCOS also have lower levels of progesterone (sold as Prometrium), a sex hormone that is important for regular menstrual periods and maintaining a pregnancy. A third hormone involved is insulin. Problems with insulin sensitivity can lead to a rise of insulin in the body, which, in turn, leads to metabolic dysfunction. (3)

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What Are the Signs and Symptoms of PCOS, and How Is It Diagnosed?

You’d think that with a name like PCOS, the condition would mean that women have cysts on their ovaries, but that’s not always the case. In fact, to be diagnosed with PCOS, a woman needs to meet two of the following three criteria, per 2013 guidelines from The Endocrine Society: (4)

Androgen Excess This appears as hirsutism, or dark, course hair in unwanted places on the face and body, severe acne, and male-pattern hair loss.

Ovulatory Dysfunction This is doctor-speak for irregular periods (most often especially long cycles or absent cycles).

Polycystic Ovaries Not every woman has cysts, but some women do. This will be found on an ultrasound.

Unfortunately, about half of women who have PCOS have no idea. (1) Below are common symptoms of PCOS. Keep in mind that not all women have every symptom. If you’re experiencing any of the below, talk to your doctor, and ask about the possibility of PCOS:

Irregular Periods Because of a lack of progesterone, periods don’t come regularly and the cycle is longer than it should be. (2) “Patients have unpredictable cycles, and have about eight or fewer cycles per year,” says David A. Ehrmann, MD, director of the University of Chicago Center for PCOS in Illinois.

Infertility PCOS impairs the ovary’s ability to develop and release an egg. A woman may not even realize she has PCOS until she’s tried to get pregnant without success and goes to the doctor for a check-up.

Hirsutism, Hair loss, and Acne Excess hair growth on the face and body, male pattern hair loss on the head, and acne may be some outward signs that tell doctors a patient has high androgen levels, and she may have PCOS.

Weight Gain Half of women with PCOS gain unexpected weight or are obese. (4) Nonetheless, you don’t have to be overweight or obese to have PCOS, as it occurs in thin women as well.

Mood Disorders Anxiety, depression, poor body image, and eating disorders are common in women who have PCOS, says Amy Medling, certified health coach, founder of PCOS Diva and author of Healing PCOS: A 21-Day Plan for Reclaiming Your Health and Life with Polycystic Ovary Syndrome.

Insulin Resistance Skin tags and dark, velvety patches of skin around the armpits, groin, and neck can be signs of insulin resistance, says Medling.

Fatigue Sleep apnea, which can make you feel sleepy during the day, is commonly reported in women with PCOS.

What Are the Suspected Causes and Risk Factors for PCOS?

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Considering 10 million women around the world have PCOS, it may surprise you to know that experts still don’t know the exact cause. (2) As Andrea E. Dunaif, MD, professor of medicine and chief of the Hilda and J. Lester Gabrilove Division of Endocrinology, Diabetes, and Bone Disease for the Mount Sinai Health System in New York City, points out, there’s a strong genetic link among women in families. For instance, if your sister was diagnosed with PCOS, you have about a 40 percent risk for having it, she says. Other potential causes include changes in utero, specifically exposure to a hormone called the anti-Mullerian hormone (AMH).

While factors like genetics are certainly not under your control, there are some problems and risk factors that bring out or worsen symptoms that you may be able to do something about, Ehrmann says. These include:

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What Should I Know About the Link Between PCOS And Type 2 Diabetes?

When you’re already dealing with a hormonal condition, the last thing you want to do is face another medical problem. But due to insulin resistance in PCOS, women with the condition have four times higher odds of developing type 2 diabetes, research reports. (7)

Talk to your doctor about taking a fasting glucose, A1C, or oral glucose tolerance test (OGTT). Keeping your weight in a healthy range, strength training, and eating a diet that controls blood sugar can help prevent the development of prediabetes and diabetes. (8)

While there are some telltale signs of this form of diabetes mellitus, often, early cases are asymptomatic. Here’s what to look out for, when to see a doctor, and what to expect if you seek a diagnosis.

How PCOS Can Lead to Infertility, But Why That Doesn’t Mean You Can’t Get Pregnant With the Condition

Unfortunately for women who want to become pregnant, PCOS is a leading cause of infertility. (1) The good news is that it’s likely a treatable infertility. The hormonal imbalance impacts the development of eggs and often prevents ovulation. (5) And when you don’t ovulate, you can’t get pregnant. Because ovulation isn’t happening or seldom does, many women find their menstrual cycles are irregular — or they won’t get their period at all. If you’re trying to get pregnant but experience especially long or absent cycles, talk to your doctor to rule out PCOS.

Remember how we said that this is treatable infertility? That’s because there are so many good treatments available. First, losing 7 percent of your body weight may be enough to balance out your hormones so that your body ovulates on its own, says Dr. Ehrmann. After that, the first course of action is usually taking oral medication to stimulate ovulation. The most common is Clomid (clomiphene), but a breast cancer drug, Femara (letrozole), is now often prescribed off label, and research shows it may be even more effective, says Dr. Dunaif. (9) Injectable gonadotrophins, which also stimulate ovaries, are additional medication options.

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Beyond these drugs, procedures such as in vitro fertilization (IVF) or a similar procedure called in vitro maturation (IVM) may be recommended for women still struggling to get pregnant or who are unable to tolerate the other drugs because of side effects. Ovarian drilling, a surgery that destroys part of the ovaries to improve the likelihood of ovulation, may be another option. Your ob-gyn will likely refer you to a reproductive endocrinologist who can discuss the right fertility treatments for you. (10,11)

What Are the Best Treatment and Therapies for PCOS?

There is no cure for PCOS, so doctors treat each symptom separately. Not every woman will receive the same treatment; it depends on which symptoms bother you the most and what your goals are, says Dunaif.

Spironolactone This diuretic blocks excess male hormones. This is not safe to take in pregnancy.

Birth control pills Combination (estrogen and progesterone) pills provide the right dose of hormones to regulate a woman’s cycle and help prevent complications like endometrial hyperplasia, says Dunaif.

Clomiphene or Letrozole These ovarian-stimulating drugs are frequently prescribed when a woman wants to get pregnant.

Weight Loss A modest amount of weight loss can help relieve symptoms and help a woman ovulate.

Anti-Inflammatory Diet Simmering inflammation can exacerbate symptoms, says Medling. A diet that features anti-inflammatory foods, like fruits and vegetables and omega-3s, will help calm things down, says Medling. (12)

Lower Stress Chronic stress is another major player in inflammation levels, says Medling. (13) Stress-reduction strategies — used regularly — are critical for PCOS women.

Avoid food intolerances. Foods that bother your GI system will increase inflammation in your body. This will be different for everyone, but gluten-containing foods, soy, and dairy are the most common sensitivities, says Medling. (18)

Go for a weight loss diet. Research shows that a diet plan that helps you lose weight is more important than going high or low carb. (19)

Work with an RD. Binge eating is common among women with PCOS. (20) A registered dietitian specializing in eating disorders can help teach you strategies to build healthy eating behaviors.

What Are Some Common PCOS Myths You Shouldn’t Believe?

There are many rumors swirling about PCOS, from what it is to who gets it, to questionable symptoms and risky treatments.

Here are the top PCOS myths you should be aware of:

Myth: You have to have polycystic ovaries to have PCOS.

Fact: In reality, many women with PCOS don’t have cysts on their ovaries. The reverse is true, too: If you have cysts you don’t necessarily have PCOS, says Ehrmann. That’s part of the reason why some experts have made a push to rename PCOS as the “reproductive metabolic syndrome,” he says.

Myth: Every woman grows hair where they don’t want it.

Fact: The truth is that this differs widely between women, depending on their ethnicity, says Loren Wissner Greene, MD, professor of endocrinology and ob-gyn at NYU Langone Health in New York City. In addition, not every woman has every PCOS symptom.

Myth: You can’t get pregnant if you have PCOS.

Fact: Really good fertility treatments can give PCOS women a chance at having the families they want. What’s more, some of these women get pregnant naturally.

Myth: If your menstrual cycle is irregular, you have PCOS.

Fact: There are other reasons for a cycle that runs too long or is absent, including breast-feeding, extreme dieting, overexercising, pelvic inflammatory disease, uterine fibroids, and thyroid disorders. (21)

Myth: If you’re not looking to get pregnant, you don’t have to worry about PCOS.

Fact: Women with PCOS often have trouble losing weight. A doctor who tells a woman to simply diet and exercise is taking too simplistic of a view. They should offer more helpful solutions and support.

Myth: You need an ultrasound to be diagnosed.

Fact: Because cystic ovaries are not necessary for a diagnosis, you don’t necessarily need an ultrasound.

Myth: Everyone with PCOS is overweight.

Fact: While weight gain is often a problem, there are thin women with PCOS, says Medling. The belief that all women with PCOS are overweight or obese makes it more likely that a normal weight woman will go undiagnosed.

Myth: Insulin resistance in PCOS causes weight gain.

Fact: Experts aren’t exactly sure why women with PCOS are often overweight, says Ehrmann. But it’s important to know that weight gain contributes to insulin resistance — not the other way around.

Myth: You know if you have PCOS.

Fact: So many of the symptoms — acne, hair loss, mood disorders — can happen for all sorts of reasons. And if you see multiple doctors for each concern, it’s common that PCOS may be missed.

Myth: Every woman with PCOS should go on the birth control pill.

Fact: It may not be right for every woman and is not a magic pill that will fix all symptoms, especially if you’re looking to get pregnant.

Myth: PCOS is a life sentence.

Fact: The hard truth is that there is no cure, but Medling says that with some work and focus on caring for yourself, you can feel better and live more in harmony with PCOS.